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Dignity in diapers

Alfie Evans/Daily Mirror

Ah, "death with dignity."

For a long time, that was the "compassionate" crack in my armor in defense of life: end-of-life care, because I have seen it done so badly, over and over. Once, visiting my mother in hospital, I watched in horror as the staff roughly inserted an enteral feeding tube into an ancient, unconscious lady in the next bed; she lay curled in a fetal position, repeating, "Mama." I found myself nodding that we needed "death with dignity," since human dignity is my deepest value.

But some writer—I wish I could remember who—pointed out that human dignity is based on: being human. Not being alert, peaceful, or without pain, or able to toilet oneself, or being cognizant of one's surroundings. Just being...human.

Vanessa Redgrave, "Evening" (2007)Our dignity does not lay upon us like a garment, with our worth stripped away by externalities. I want to die like a luminous Vanessa Redgrave character, fading gracefully and quickly. With dignity. Without tubes. But my dignity is impressed upon me by my Creator; if I do wind up helpless and burdensome, or even in agony, He has given us His own Son as a template that I can never (in the words of Blessed John Henry Cardinal Newman) "be thrown away." His Son's earthly body, my church, stipulates that no one need degrade my dignity with "extraordinary means" to keep me alive—but neither may they dictate that my "dignity" be preserved by hustling me (or even helping me push myself) over the edge of death.

Fra Angelico, "Christ Crowned with Thorns"To care for those stripped of the world's signifiers of "dignity," whether intellectual capacity, sanity, continence, teeth, hygiene, material possessions, freedom, clothing, any of it, is to see (on His explicit instructions) the face of my Redeemer. To lose my world-approved dignity in any of those domains is to become one with Him in suffering. I saw this mutually conferred dignity many times at Calvary Hospice, where the staff tenderly fed and bathed and turned patients with cancer in their final weeks, sparing them brutal "interventions" but never, ever deliberately hastening death. Each, caregiver and patient, being Christ to the other.

How easy it is to rhapsodize over our sublime human dignity while gazing at a Rembrandt, or watching Misty Copeland dance, or hearing Martin Luther King orate.  How easy to treasure life when you hold a thriving baby or sit at the knee of a spry, healthy grandparent. It's even easy to marvel at the dignity of the frail, if they're heroic enough, a Mother Teresa here and a Stephen Hawking there. But how difficult it is, when life fades, or arrives broken, or leaks uncontrollably from various orifices.

Francesco Bassano, "Parable of the Good Samaritan" (detail)Bodily fluids, in fact, seem to be one of the breaking points in the world's definition of human dignity. For many of us, it's the ultimate taboo of vulnerability. For that reason, perhaps, this loss of control has become for me a stubborn sign that the crucified Christ is present, his side pouring forth its "water."  I have my own private heroes' gallery of human dignity:

  • the gregarious owner of a guest farm in Pennsylvania whose lower jaw was lost to cancer, who communicated in cheerful notes and wore gauze pads sewn by his wife to absorb his saliva.
  • The beloved art teacher at my daughter's high school who survived bladder cancer and made hilariously candid references to his "pee bag." (What an example to a classful of girls at the age when a blackhead seems like a catastrophe!)
  • My cousin Rik, who returned to teaching periodonty after a spinal-cord injury deprived him of control of the lower half of his body at mid-life.

And I experienced it most vividly in caring for my Uncle Don in his very old age. (That's him, with a strawberry milkshake.) His care at the very end of life was exhausting and yes, to the "system" it was damned expensive. Yet he was radiant with joy, and delighted in receiving my ministrations. He did not need to be Vanessa Redgrave, fading elegantly. He was luminous in his own way. Can we see the light in others, that light of life that is the deepest dignity, from conception to something like natural death? Or can we only get an itchy trigger finger to put that light out forever, "for their own good"?

Posted on Thursday, April 26, 2018 at 12:42PM by Registered CommenterBrenda from Brooklyn | CommentsPost a Comment

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